Explicitly Sick: Marcia Darbouze: Disabled Weightlifting, Race and Covid, Ableism and Activism, and Small Fiber Neuropathy
Website/Blog, Twitter, & Instagram Handle
doctormarcia.com
Disorder Info
What is your disorder? *
undiagnosed autoimmune, small fiber neuropathy
At what age did your disorder become a daily issue? *
26
Who were you before your illness became debilitating? *
someone that didn't plan out spoons or activities, someone that didn't need constant methods to manage pain & energy.
What would you do if you were not dealing with your disorder and/or disability? *
spend more time freely outside in the sun! photosensitivity in Florida is a bitch.
What would you like people to know about your daily life? *
I'm always sick and in pain despite how I look, how much I lift, how much I work.
What would make living and moving in the world easier for you? *
Doctor's that understood that black women do feel pain and that young people can be sick. I have been undiagnosed for 5 years, and only in the past year have I gotten the care I needed.
Do you have any life hacks? *
Juicing daily for digestion, salt tablets before workouts, weekly acupuncture for more energy, compression socks all the time, sunblock no matter what when I leave the house
What kind of support do you get from family or friends? *
emotional support from a few friends through our Disabled Girls Who Lift community, they can related to my experience
Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
ALWAYS. My last neuro appointment I was told to drink water, do exercise, and learn to get over it.
How has your chronic illness affected your relationships? *
I've grown apart from people who can't understand why I don't attend certain events (especially in COVID times), or related to my disability experience.
Is there anything you are afraid to tell people in your life? *
I am not afraid to disclose my issues, but usually I do not confide in anyone about stress/anxieties/feelings unless they have a disability (visible or not). I've found that people who can't relate can't hold a space for me, I don't want any thoughts & prayers or silly ideas, and I definitely can't stand pity.
What is your best coping mechanism? *
Yoga and lifting!
What are you the most concerned about and the most hopeful for in the future? *
I'm most concerned that my capital D diagnosis will show itself and be a real shit. I'm most hopeful that I can run a successful business from home and start a family within the next two years.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Disabled Girls Who Lift, Just Move Therapy.
What makes you energized or enthusiastic? What drains you?
Mentally anything that requires big brain work on a brain fog day is draining. Filling this form out on a bad day would be work. On a good day, it's fine. So, depends. Physically also depends. On a bad day, I'm on the couch and washing my hair is a mission. On a good day I can workout, take a walk, and cook dinner. the one constant drainer is UV rays, high UV index days are my kryptonite.
Any favorite books or shows?
I love short story books, finished up 'all the names we have for god' recently. Going to start Disability Visibility soon. As far as shows, Ozarks, Parks & Rec, Insecure, Dave, Rick & Morty.
What is the hardest and/or best lesson your condition has taught you?
Slow the fuck down and rest.
What is the best purchase under $100 that helped your life
salt tablets
Any questions you think we should add to this list?
current topics related to anti-racism, black liberation, and COVID
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